My Epilepsy Journey: “There are terms and conditions to my life now”

"I firmly believe it’s down to work-related stress... I felt I was on a very fast conveyor belt.''

Epilepsy affects over thirty-seven thousand people in Ireland and yet is still something many people don't quite understand. Most will be familiar with the concept of seizures, but that is far from the only toll that epilepsy can take on the human body. A Mayo woman has spoken to us about her experience with epilepsy, how she is tackling the stigma and her advice for other sufferers.

"In November 2009, I experienced strange sensations, it’s the only way I can describe it,’’ Brenda Quigg said.

She describes the early symptoms 'an intense déjà vu and feelings of nausea that would just come and go.' Brenda went to the doctor to eliminate all the likely illnesses, undergoing a brain scan which turned out perfectly fine. Quigg, who is a community nurse, said that she was aware of how important it was to get checked out, but when all came back clear, she figured all was okay. She continued cycling and running but still didn’t feel right. In July 2012 Brenda had her first ever speech arrest. While on the phone, she lost the power of her speech for 30 seconds. She put it down to tiredness, adding that she was in denial about the issue. In November she took a full nocturnal seizure for the first time.

‘’I woke up to paramedics and neighbours and different people around me,’’ she said.

Quigg, who is in her 30s, describes her epilepsy as 'idiopathic’. This means it’s of an unknown cause, but she blames the pressures of her work for making her sick. '‘I firmly believe it’s down to work related stress, It was just go, go, go and I felt I was on a very fast conveyor belt." This is when the doctor told her it was epilepsy; she found it difficult to believe.

"I found it hard to accept the diagnosis because my scans were fine, how is it epilepsy when a CT scan is normal?"

However, she soon learned that all those strange sensations and feelings of déjà vu are actually 'partial' or 'baby' seizures, which are signs that there is a big seizure coming.

‘‘I had a significant fall years before while mountain climbing in New Zealand and banged the left side of my head," she explained.

The doctor told her that this is a common cause. "He told me that a child can fall at the age of seven and break their arm and at 17 he could develop epilepsy. An old head injury that isn’t even evident on a scan could be the issue."

 Brenda pictured left between Rick O' Shea and Joe Schmidt at Saddle Up For Epilepsy event.

Quigg noticed other things can now help to keep the condition at bay, such as getting enough sleep, taking it easy with alcohol and adhering to a good diet. She adds that 'even days leading up to your period can be a factor'.

"Never leave yourself in a vulnerable position," she explains, insisting that it’s about balance.

The diagnosis affected more than just her health.

"I’m a community nurse and I lost my car and had to change my job, which was extremely frustrating," she said, but adds that the worst part is that as someone who is very social she had to tell everyone about her diagnosis and ask for help.

Brenda, however, has a very positive outlook and has found a way to manage her illness.

"I went on medication and it took a while to settle things down," she said. "I got back to work and now know I just have to take it easy."

''If I had to sum it up in a sentence I’d say, there are terms and conditions to my life now," she said, adding, "If I adhere to that, I do believe that stabilises the epilepsy." Brenda says the most important thing to do to help people with epilepsy is to be helpful and accommodating.

''People need to be told about their seizures ‘it’s okay, and nothing to be mortified about and if it happens we’ll be with you,'" she adds. ''Even if your employer can support you by saying, 'We’ll find you somewhere to work while the car is taken off you for a while'. It’s hard to accept changes you have to make but you can’t restrict yourself too much. For me personally, mindfulness really helped."

She says the important thing is to be vocal and open and to speak to others who have the condition through things like Facebook.

"Epilepsy Ireland has a closed group on Facebook where people can throw up questions about medication and side effects, and that type of thing is all you need, you just need someone to tell you (that) you’re not alone."

A sense of community seems to be the most important factor for Brenda, as well as raising vital funds to improve the lives of those with the condition. This is why she created the charity cycle Saddle up for Epilepsy. It's based in Mayo and has been running for two years; it has already raised over €37,000.

''The donation goes directly to the charity, but if you’re not a cyclist and you want to come along and have a chat and a coffee, please do,'' she said.

If you’re interested in the cycle, check it out here.